▸ Patient No. 2 had acute lymphoblastic leukemia. Although she underwent an allogeneic transplant from her HLA-matched sister, she relapsed and died 1 year later. Her experience of hope closely matched her treatment plan, with the curve of her hope trajectory paralleling her treatment's ups and downs. “Because of the match, she was hopeful for a good response, but when she experienced chemotherapy side effects, she became depressed and difficult to engage. After the transplant, she enjoyed a brief state of remission and felt hopeful about regaining a normal life, but she began to be continuously fatigued, and along with this came the fear that she would never feel better. She relapsed within 3 months and was offered a second transplant, but a slim chance for prolonged survival.
“She refused the transplant and chose to live her precious last days as positively as she could, surrounded by family and friends, even giving herself a going-away party,” Ms. Cammarata and colleagues reported. “Her hope trajectory completely mirrored her disease and, surprisingly, the curve even rose as she approached death and treatments failed.”
▸ Patient No. 3 expressed “endless hope,” in spite of a poor prognosis, the death of a friend who also had leukemia, and ultimately his debilitating graft-vs.-host disease. “He had a tremendous amount of optimism from the time of diagnosis,” the authors wrote in the poster. “He felt the transplant made him a better person, and he became closer than ever with his family.” In this case, the trajectory of hope was higher than one would expect, and remained high even in the face of life-threatening complications.
Multiple aspects of hope can be fostered, the investigators suggested, not only for the patient but for the medical team and family. These can influence the already complex and confusing role that hope plays in the mind of a bone marrow transplant patient.
Go Carefully With Informed Consent
Dr. Carl G. Kardinal of the University of Missouri in Columbia suggested that Phase II trials offer patients with advanced disease hope that might not otherwise be available. He and his colleagues evaluated the hope trajectory of 50 consecutive patients who consented to participate in phase II cooperative trials. Patients were interviewed by a psychiatric social worker who was not directly involved in their care.
All 50 patients stated that hope of therapeutic benefit, however small, was their primary motivation to join the trial. Other motivating factors were altruism (29), avoidance of regret that later they should have participated (19), lack of other treatment alternatives (14), and trust that their oncologist thinks this trial might help (10), Dr. Kardinal reported.
He pointed out that this is a vulnerable patient population for whom “truly informed consent” might not be possible. He further maintained that the current informed-consent process is too cumbersome and should be simplified.
“Hope of a treatment response is the overwhelming motivation of cancer patients to participate in phase II trials. This places an even greater responsibility on the physician-investigator to protect these human subjects,” he said.
Physicians Can Create a Space for Hope
Health care providers can foster hope in the following ways:
▸ Even in cancers of poor prognosis, patients can survive. When physicians deliver the diagnosis, they can create a space for hope.
▸ “What can I control?” is an important question for patients. Assess what level of information the patient wants, and communicate accordingly. For patients who believe that a healthy lifestyle might make a difference, foster this behavior.
▸ Psychosocial and support resources might have a positive impact. Inform patients about support resources and peer support programs. Connecting with other patients might help survivors find meaning.
▸ Cancer is an existential crisis. Some patients search for the meaning of it while their faith, spirituality, and personal beliefs might be challenged. If the patient uses faith or spirituality to gain hope, find ways to support this tool. If the patient's questioning of his or her faith results in a loss of hope, consider helping the patient connect with a spiritual community or adviser.
Source: Ms. Pearson
My Take
Seeing the Future as Half Full
A diagnosis like cancer calls the future into question and causes us to peer anxiously ahead. Hope is a way of seeing our future as half full, rather than half empty. Unrealistic hope can be a form of denial, and many cancer patients find themselves caught in the “prison of positive thinking,” urged to be upbeat and positive no matter how bad their prognosis. On the other hand, hopelessness is a symptom of depression, and a uniformly down-beat view is demoralizing to patient, family, and medical staff. The real question is: Hope for what?” Even a very short future can be more than half full.